Yes, I am on Topamax and Lamictal. I was just diagnosed last summer and we are still trying to find the right medication for me. I did have a few seizures as a child. I do have a great doctor at Vanderbuilt University Hospital. His nurse is always available. She gets with him and gets back to me by the next day if not that day. So, that helps.
I didn't even tell my daughters that I thought I saw the numbers on the clock moving during that seizure last week. They would really think I had lost it. I'm 56 after all!
Thanks for helping me feel a little better!
It does sound like you've got a great support team there, Carla. It must help a lot. A lot of people get to see a consultant once every few months and have to cope alone in between. So well done, Vanderbuilt Uni.
Your mention of hallucinations interested me, partly of an odd experience I had this evening. I'd just had a seizure - which in itself is depressingly familiar, especially the last few weeks. And I became convinced that there was someone or something beside me on the bed. (P.S. there wasn't.) It wasn't an actual visual hallucination like yours. I was just certain that there was something there, something very malevolent. I staggered out of the bedroom and it felt like this thing was following me. Fortunately the feeling only lasted about a minute and I was left with the usual, comforting post-seizure experience - not being able to speak properly for an hour.
I guess that when the brain goes haywire, anything can happen to the senses. When I still had grande mals I often 'heard' music just before passing out. Other people imagine strong smells. So you're not alone. The important thing is that they're linked to your condition, not your sanity. And, most importantly, they pass.
Before I was diagnosed last summer and was still trying to work under a stressful situation, I started having the speech problem. My mouth would twitch, my words would get stuck and I would stutter. I had no idea that I was sitting at my desk and having seizures. "Speech arrest" certainly fits the description of what was happening to me while I was still trying to work. It was happening all day long and was very embarrassing.
On top of not knowing what was going an with me neurologically, I could tell they were just waiting to fire me at work even though I had FMLA, or at least they thought they could. When someone wants to get rid of you they can make your life pretty misserable. I'm 56 and had the onset of asthma a little over four years ago. It came on with a veneange. One injection that I take monthly is $10,000 along with many others. I was taking my nebulizer to work and doing breathing treatments, but still missed more work that I would have liked to. I didn't miss anymore than I had sick or vacation time for, though. They thought I would just say o.k. and walk out the door with no medical insurance. The university is covering my insurance while I'm n working on the disability mess. I have been turned down. It is through the KY Educational Retirement Systems, which I thought would be much easier. I've turned it over to my attorney. From what I hear, that's a lot faster.
Sorry, I was rambling. It's the middle of the night and I can't sleep.
I'm sorry to hear of your delema, wow, you've been through a lot of crap. I had a similar situation, I was 47 yrs old at the time.
My "Speech arrests" were affecting my job. (dealing with public on the phone) and my employer of 30 years gave me an ultimatum ~ take the medical retirement pakage or train for a different position with-in (I was an Administrative Manager for the Government of Canada ~ but I had a neuro/psyc evaluation and it was determined that due to the long term use of the meds, I did not have the ability to learn a new job) or get laid off and try my luck with another Gov't Department that would pay me at the current rate.
I took the medical retirement.
It is against the law in Canada for an employer not to hire a potential applicant because of a known seizure condition. It is a form of disrimination and violates the "Canadian Human Rights Act" By law the employer must provide adequate working conditions or supply special needs as/if required to effectively do the job, even if that means restructuring the work area. However, if a case like that ever went to court, it would be awfully hard for anybody to prove that they were denied a job for THAT reason, therefore cases like that usually go unreported. Randy diagnosed with epilepsy and Ulcerative Colitis in 1979 - current meds are: 275mg dilantin/day 120mg pheonobarb/day 3,000mg Mesasol/day